Psychosocial issues for retinoblastoma survivors and their families

Most cases of retinoblastoma develop during a very sensitive time in a child’s life. The effect will often be greatest during the first year of treatment. The treatment center should evaluate the patient's family situation as soon as possible. Some common family concerns include financial stresses, transportation to and from the cancer center, and the need of family members to take time off from work. If the patient or family members have concerns, they can be addressed before they become a crisis.

Centers that treat many patients with retinoblastoma may have programs to introduce new patients and their families to others who have finished their treatment. Seeing another patient with retinoblastoma doing well is often helpful for the patient and family.

If needed, centers can also refer patients to special programs and facilities for the visually impaired. Most patients treated for retinoblastoma in only one eye will have normal vision in the unaffected eye, but they may have a cosmetic deformity in the treated eye. The cosmetic problems can often be lessened by treatment in a center with expertise in reconstructive surgery. Early intervention and counseling can also help address any psychological effects of changes in appearance.